colostomy – Sage Telling Your Story

This story is not just about one visit to a doctor or nurse. It involves multiple visits to several doctors. But it is all just one story. It does not have a happy ending. Nor does it paint a particularly flattering picture of the state of the health care industry in the U.S. today. The names of the medical professionals have been abbreviated to obscure their true identities. The source material was not my personal recollection primarily, though I was present for each of the events, but was taken from my late husband’s personal journal, written at the time of the events in question.

In the summer and fall of 2003, Laurin’s PSA level began to rise. He was 77 years old. At one point, his PSA level was measured at 19–almost double what was considered to be on the high side of normal. His doctor, Dr. S, recommended a biopsy of his prostate. On this particular visit, Dr. S. was accompanied by a young female intern, who was “shadowing” him. Dr. S. asked if it was OK if she was present for the visit. Laurin consented.

In the corner of the doctor’s office was an unusual type of lamp. It rested on the floor with a long neck that curved from vertical to horizontal and had a small, elongated but high-powered lamp on the end. I asked Dr. S. what the lamp was for. He said, “I’ll show you”. He asked Laurin to lie back on the examination table and pull down his underwear. He placed the light at the end of the lamp under Laurin’s scrotum and turned it on. With the light behind it, the scrotum became translucent. Dr. S. said, “See that? That’s water.” I could not begin to imagine what his point was.

Our next appointment was even more bizarre. It was a Monday. Apparently, Dr. S. was intending to perform the biopsy on Laurin’s prostate. However, Laurin and I were both confused on that point. Consequently, we had not done the necessary prep. In addition, Laurin (and I) had a number of concerns about possible adverse effects of the biopsy. (Biopsy of the prostate involves inserting an instrument through the anus. Triggering the device causes a hollow needle-like device to penetrate the wall of the rectum and snatch a bit of tissue from the prostate gland. If any procedure is likely to invoke queasiness in a male patient, including me, it is this one.)

Dr. S.’s response was to basically go ballistic. After assuring us that complications have arisen from less than 0.1% of such tests he added, “If you (meaning Laurin) were a 5-year-old, I would simply tell you to lie down and take it.”

Well, that was the end of our doctor-patient relationship with Dr. S. We started seeing another urologist, Dr. H. He informed us that Laurin’s PSA was at 9. No explanation was given for the apparent sudden drop. In addition, Laurin’s Gleason Score–a measure of the aggressiveness of the cancer–was 7. These numbers are borderline-positive for Stage IIa prostate cancer.

The recommended therapy for Laurin was radioactive seed implants, also known as internal radiation therapy. This involves inserting a large number of tiny pellets of a radioactive isotope, such as plutonium, into the prostate gland. In Laurin’s case, approximately 70 of these tiny pellets were placed, one-at-a-time, into his prostate by a radiological oncologist, Dr. T. The patient is given a local anesthetic and the process takes less than an hour. The after-effects are mild and short-lived. I was in the waiting room of the doctors’ clinic the entire time. Eventually, the prostate dries up–I won’t say is fried–so that it looks like a date…or raisin, I’m not sure which.

On one of the follow up visits with Dr. H., Laurin was in the examining room waiting for more than a few minutes. When Dr. H. came in, he couldn’t find some instrument that he needed and in a pique of righteous rage at the negligent nurse, with his arm swept everything on the counter onto the floor. I could hear the commotion in the waiting room. Time to look for urologist number three. (Some time later, I asked Dr. T, the radiological oncologist, who was really quite civil and was himself suffering from a rare form of bone cancer, “What is the deal with urologists, anyway?” He answered to the effect that urologists are notoriously emotional creatures, which I interpreted as, “When it comes to your dick, don’t get sick.”

Recently, medical researchers have been telling men that they should stop getting routine PSA tests if over a certain age. They tell us that a very high percentage of us will develop prostate cancer–somewhat like Alzheimer’s Disease–but that it is very slow growing and we could very well die of some other cause first. Laurin was given similar counseling by Dr. H. early on. Yet, doctors don’t put croissants on the table by not treating disease. I don’t know what Laurin’s life would have been like had he not had the internal radiation therapy. I do know what his life was like for years after the treatment, however.

Fecal incontinence, according to Dr. T., affects only about 5% of men who have had the seed implants. Just another seemingly inconsequential factor in balancing prostate cancer treatment against letting it run its course. Other friends of mine who have had surgery to remove the prostate ended up with a perforated rectum or lifelong impotence. In terms of the impact upon a man’s quality of life after age 75, I would have to say that fecal incontinence must be the worst of the three side effects. The horrors Laurin and I went through are too embarrassing and humiliating to attempt to describe here. Let me just say that they led to him having to put severe restrictions on his social life, undergoing a colostomy, and suffering the complete loss of his self esteem.

Let me end this diatribe with this caveat: the medical profession will never say “No” to a decision to fight cancer with everything you’ve got. Medical costs during the last year of life account for an enormous chunk of Medicare dollars expended. In America, we tend to believe in “fight to the last ounce of your strength” or, as Dylan Thomas wrote:

“Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light”.

However, if the light has faded to a dung brown, perhaps it’s dying be a blessing.

© 22 June 2013

About the Author

I came to the beautiful state of Colorado out of my native Kansas by way of Michigan, the state where I married and I came to the beautiful state of Colorado out of my native Kansas by way of Michigan, the state where I married and had two children while working as an engineer for the Ford Motor Company. I was married to a wonderful woman for 26 happy years and suddenly realized that life was passing me by. I figured that I should make a change, as our offspring were basically on their own and I wasn’t getting any younger. Luckily, a very attractive and personable man just happened to be crossing my path at that time, so the change-over was both fortuitous and smooth.

Soon after, I retired and we moved to Denver, my husband’s home town. He passed away after 13 blissful years together in October of 2012. I am left to find a new path to fulfillment. One possibility is through writing. Thank goodness, the SAGE Creative Writing Group was there to light the way.

[Prologue: My story today concerns not a single life-altering event, such as a car wreck or fall, but a series of accidents of a related nature spread out over a period of many years. A month ago, I told a story of Laurin’s and my experience with various medical doctors and his radioactive seed implants that led to his fecal incontinence. I will not go over that ground again. What I want to tell you today is what the two of us went through during that period of about 8-1/2 years of gradual descent into constant misery and worry. It is mainly about shame and its effect on two human beings. My writing this and sharing it with you is not in any way a cry for pity. I seek only to assuage some of my own shame and trauma that have lay dormant, apparently without possibility of relief, and to impress upon you, when faced with a life-or-death decision about medical treatment for yourself or a loved one, to weigh carefully the importance of quality of life versus quantity.

In an effort not to oppress you good folk with negativity, I will occasionally indulge in attempts at humor. In that vein, in an effort to avoid the constant use of scatological words to refer to the natural end product of the digestive process, I have created an acronym for “End Product of Digestion”, EPOD. This term should not be confused with docking stations for recharging hand-held devices.

Because he was the faithful keeper of a daily journal–a practice which I have now adopted–I am able to reconstruct an exact timeline of his early history with fecal incontinence and deduce, with a high degree of certainty, it’s causation.

Laurin had the procedure known as “prostate seed implant” in December of 2003. Less than three weeks later, he reported the first instance of lack of bowel control with such an element of consternation that I am certain it was the first in his recent experience. Over the next four months, three other episodes followed. Slowly, they increased in urgency and, thus, frequency. What follows is a catalogue of some of the lowlights of our lives during the ensuing eight years.]

* We were walking to church one Sunday morning when Laurin suddenly needed to evacuate. The closest site offering some privacy was behind the large bushes in front of an apartment building. Terrified of being seen, I walked some distance away and stood at the corner trying to appear as if I were waiting for someone to pick me up.

* We drove to Mazatlan, Mexico, for a week’s stay at a timeshare resort. On our last day there, we were having breakfast in the dining room when Laurin suddenly needed to go. When ten minutes dragged out to fifteen, I knew that it hadn’t turned out well. I finished breakfast and went to the men’s room to check him out. There, on the floor was a trail of EPOD leading from the door to a stall, where Laurin was busy cleaning up. Terrified, that someone would come in and see it, I quickly cleaned it up with paper towels.

* We were at a concert of the Colorado Symphony Orchestra. During the intermission, Laurin went to the bathroom. He was gone a long time. I was already seated when he returned. I could detect an odor. I hoped that it was only because I was sitting right beside him. Even before the next musical selection ended, a couple of people stood up and moved to more distant seats. During the interlude, even more did the same. Soon, we were sitting alone in the row.

* We were browsing at the Tattered Cover Bookstore in LoDo. Laurin went to the men’s room. I waited…and waited…and waited. I knew what the problem was. I noticed a line was forming outside the men’s room. I decided to check and see if I could do anything. I stepped inside the restroom where several men were waiting to use the single stall. I was ashamed to even say anything but I asked how it was going. He said, as always, “OK”. I left the bathroom. When he came out we took the 16th Street shuttle. He had EPOD on his socks and shoes. I hoped nobody could see or smell. No one indicated that anything unusual was going on.

* Saving the worst for last, we were driving around Glendale when Laurin said he needed to go to the bathroom NOW. The new King Soopers hadn’t been open long. I dropped him off in front and found a place to park and wait. Fifteen minutes rolled over into twenty. I decided to go and check on Laurin. I asked the security guard where the restrooms were. I turned down an aisle in the frozen food section. From a distance of 30 feet, I could see a pile of EPOD on the floor, perfectly formed like a soft-serve ice cream cone, complete with swirl at the top. I would have laughed out loud if I hadn’t been stricken with utter terror. Apparently, no one had reported it so far. But I had no way to clean it up. I thought, “I should find someone responsible and tell them so it could be cleaned up”. I walked the length of the store but could find not a single employee to tell. Perhaps my fear of how such a bit of news might go down blinded me. I left the store and returned to the car, watching the door to see if security guards were going to haul Laurin away. No, several minutes later–it seemed like hours–he comes sauntering out as if nothing untoward had happened.

It was then, after many visits to doctors about his condition and the utter embarrassment and terror of the “Incident in the Frozen Food Aisle” that we welcomed the additions of Pampers for Men and a shoulder bag with cleaning supplies to his wardrobe. Laurin even resorted to cutting off the tail of his dress shirts with scissors so they wouldn’t get soiled. Once, when I picked up one of his thus-modified shirts at the cleaners, the nice woman politely said, “I’m sorry, we couldn’t repair this.”

On one of our last visits to his internist, we were told, “I have just the cure for you.” I said, “What?” He answered, “Physical Therapy”. We would be happy to try anything so we said, “Sure”. Turns out that this particular therapy, as with many other forms, involves muscle-strengthening–namely, the sphincter muscle. Measuring the strength of that muscle requires the insertion of a probe which is connected to a machine that shows on a computer screen the intensity and duration of the muscle’s constrictions. This is something that would normally be of interest to many gay men but, unfortunately, the equipment is very expensive.

After eight sessions with the therapist, she recommended and the doctor concurred that further sessions would be fruitless. Laurin’s muscle or the nerve leading to it was unable to respond to treatment. I conclude that the seed implants had, over time, fried not only his prostate but this area, as well. Apparently, he was one of the ill-fated 5% that suffer such after-effects.

Laurin’s sole recourse at this point was a colostomy, whereby the colon is severed from the rectum and rerouted to exit the abdomen slightly to the left of the navel. The end of the colon is rolled over like the end of a balloon, sewn into place in the muscle wall, thus creating a new way for the EPOD to escape confinement. Thus, began a entirely new chapter in Laurin’s life story. Unfortunately, it was not to provide a happy ending, but that’s another story.

Tag: colostomy

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